More information on Intrahepatic Cholangiocarcinoma please
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Mizzey,
I too want to welcome you to the site. I am glad you found us. You have definitely found the right place to be even tho’ it is not where anyone wants to have to go. The help & support here is amazing. I don’t have much to add to what you have already gotten from the others, but just wanted to give you another warm welcome. I will look forward to an update on your sister when
you know more.Hugs,
DarlaThanks so much for your kind words Kris, I am fine at the moment just clinging on to hope. Already a weight has been lifted just by talking to you all and knowing that I can share and gain so much from you all. Gavin she was diagnosed and underwent a liver resection at the Churchill Hospital in Oxford and then referred to Dr Warner at Stoke Mandeville. I have been in email contact with Helen at the AMMF who has been so helpful and has asked me to get back to them after the next ONC meeting in February if we do decide to go for a second opinion. She has been assigned an Ian Rennie nurse which is equivalent to Macmillan support i think. She saw her today and the nurse is also going to get support for her 15 year old daughter. I don;t know why but I am feeling hopeful that the chemo is working although she has now finished cycle 3 and the fatigue is definitely getting worse. Will update when we know more but just wanted to say how grateful I am in finding you all. Thank you
Link for a Macmillan Nurse, nurse forgot to include this in my post –
http://www.macmillan.org.uk/HowWeCanHelp/Nurses/AboutMacmillanNurses.aspx
Gavin
Dear Mizzey,
Welcome to the site. Sorry that you had to find us all here and I am sorry to hear what your sister is going through right now. But I am glad that you have joined in with us here as you are in the best place for support and help and I know you will get lots of both from everyone here.
I too am from the UK, in Dundee in Scotland. Can you tell us where your sister was diagnosed and where she was treated as well? Have you heard of AMMF? It is the UK’s only CC related charity and you will find much UK specific info pver there should you wish to learn more.
Does your sister have the services of a Macmillan Nurse? They are invaluable and my dad had one after his diagnosis and during his fight with CC. If your sister does not have one I would strongly recommend that she get one as they will be of great help to you all. Your sisters GP,ONC or surgeon would have to recommend her to them and I know that she would get the services of one based on what you say. Trust me on this, they would be of great help to you all.
Has your sister thought about getting a second opinion on things? Under the NHS system she would be entitled to a second opinion to a facility, surgeon or ONC or her choice should she wish to seek one.
You have so done the best thing that you can for your sisterin seeking to learn as much as you can about CC and the better informed you are the better you will be able to help your sister with everything. We so know what you are going through right now with many of us having been there as well. Please know that you are not alone in this, we are here for you. Keep coming back here. Let us know how things go with your sister and lean on us, we will help.
My best wishes to you and your sister,
Gavin
Mizzey –
I too like Lainy am glad that you have hospice into help you. Lean heavily on them for any concerns you have. Remember they are there to keep her comfortable. Do not forget to take care of yourself too. As a caregiver you run this risk of burnout and getting sick too. All those people who have said “Call me if there is anything I can do,” I suggest calling them and asking them to help even if it’s cooking a meal for stopping by the store. Most people truly want to help but don’t always know now.
Also take each day as it comes. Try not to worry too much about what tomorrow will hold, it’s going to come one way or the other so there is no sense in worrying about it…..it is much easier said that done and if you can completely do it then let me know.
Keep pushing the doctors for answers. If you don’t understand what they are telling you then stop them and make them explain it better. Also take a list of questions to the appointments with you so you won’t forget what you are going to ask. It is very easy to get flustered and forget what you needed to know.
Also you could push for another opinion. Not sure how that works over there but give it a try. I know we have members on here who have had more than one resection.Hugs,
KrisVDear Mizzey, I really am glad to read that you have called in Hospice. Having Hospice will bring relief to all of you. We have all learned that comfort is the bottom line and Hospice will see to that so that you can continue to ask questions! A little humor there. It is understandable to search for answers especially for this crazy CC. This site started in Jan of 2006 and we have come a long way and you never know what is right around the corner or in another Doctor’s mind. Keep laughing as it is the best release. I am thinking your Sister knows more than you think and she is trying to keep everyone upbeat. Be strong.
Thank you Duke,Lainy and Kris – I really appreciate getting you responding so quickly. My sis is seeing a hospice nurse today and I am really hoping that she can get some support from her. She is trying to sort things out in case the prognosis is realised. She is such a gentle soul and we as a family are trying so hard to get her to think beyond the time she has been given and to find it within herself to stay positive and hopeful. We are hoping and praying that February news is good and that the GEM/CIS is working. Every night I pray for a miracle and welcome your advice regarding searching previous posts. I do this daily and is what has given me hope that every case is different I don’t want Time to be our enemy but its very hard to plan lots at the moment as she is struggling with fatigue and stomach pain. Her operation went well but her wound keeps opening and she is experiencing a lot of pain still so we are just hoping that she can start to fill a bit better soon. It would be great to hear from other ICC patients so we know what we are up against. But as you say Lainy we are getting great care from the hospital already. I have been informed of SIRT which I will ask the Oncologist about in Feb. Unfortunately the cancer is appearing on the left lobe (the piece they did not remove) and I have asked about Resection to which they have said they wont be able to do. We are just really in limbo until February when we find out if the treatment is working to contain the cancer cells that are already there. Thanks again for this amazing community – I am gently persuading my sister to get involved in finding out more about her diagnosis but we do laugh, as I am the one who needs all the facts and she thinks ignorance is bliss
She has a great network of support through friends and family and your support helps me to keep on gently pushing her to fight and find ways to beat this disease.I have ICC but am not eligible for surgery. I think there are many patients who have had more than one resection so that might be an option before a clinical trial. As KrisV said, there are many on this site from the UK who can advise you on care there.
Tell your sister to keep her head high and look this right in the eyes. Attitude is everything.
I expect there will be many responses by this time tomorrow with specific thoughts. In the meantime, use the Search function and explore.
Duke
Dear Mizzey and a big HELLO from across the pond. You have come to the best place to be for CC support. Your Sister has done all the right things and it sounds like her Doctors are watching closely. I know we have had CCers on here who had surgery and then had some spots appear and I know they will be stepping forward to help where they can. Attitude is so very important and it is really helpful to all to try to keep hope upward bound. Yes, this is a very rare Cancer but we have made some great strides in just a few years. You just ask away and we will try to answer. We have lots of hope and actually we have some MIRACLES as well. Looking forward to her Feb. appointment, you will know more then and we appreciate knowing also. Be strong!
Mizzey –
Welcome to the best little family ever. It sounds like you have already found the roller coaster ride that this disease can be. I do not know much about intrahepatic as my husband was diagnosed with extrahepatic almost two years ago. There are plenty of resources on the website so wander around and read as much as you can. I also know there are plenty of people who are in the UK on this site so there will be many who will be able to chime in on ways to help.Also you can go up and use the search button to look for specific topics and posts.
Keep us posted on how your sister is doing. Keeping you and your family in my thoughts.
KrisV
Hi There, I am so glad I have found this site which has helped me try to understand a bit more about this cancer. My sister was diagnosed in August with Intrahepatic Cholangiocarcinoma and was a candidate for resection with the intention of cure. She underwent surgery in August which they hoped would be successful but to make sure was advised to undergo 6 cycles of GEM/CIS. 2 Weeks before Christmas she had an MRI which showed spots on the liver which they suspect is secondary. We are all devastated and shocked by this and wanted to reach out to see what else we can do. I have read so much and learned so much from you all but need to know if there is anything else we can do. She has another MRI in February which will indicate whether the GEM CIS is working and next stage will be to see if she eligible for clinical trials. We are based in the UK are we have been told that this is such a rare cancer. My sister is a 46 year old single mother and has a 15 year old child so if there is anything we can find out I would be so grateful..
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